Endurance cyclist much worse after robotic mitral valve repair

[Jackiecip]

Hello,
I am desperate for help/answers. I was an endurance cyclist prior to surgery. I was extremely strong at long HC climbs, steep climbs ( gradients 11-21% ), I was very good for my age and could compete with much younger women, men. I held many Strava climbing QOMs.
My severe Mitral valve regurgitation came on pretty suddenly. I noticed being more winded on steep climbs and it took me longer to recover at top. Also trying to jog with puppy up hill, suddenly would need to stop, could not catch my breath. Husband attributed it to my age (60yo) but I knew that there is was something wrong.
Had robotic mitral valve repair with ring 10/20/2023. Was instructed I could only walk for 6 weeks. Followed instructions and was walking 7 miles at week 3. I never could take beta blockers because my blood pressure low. My pre- surgery resting heart rate was low 40’s. It was crazy to see my heart rate in the 100’s for so long. It’s finally in 60-70 range now. I was very dizzy and winded during my initial recovery.
I was told I would feel great, would be back to my cycling.
8 months later, I am miserable. I can only ride very slow. If I try to exert myself, I feel like I can’t breath. Literally like a fish out of water. My husband says it’s like I am stuck in first gear.
Before surgery, I never thought of my breathing. It came so easy, natural. I loved challenging myself on steep climbs. It was easy for me. I could recover so fast on any hard efforts.
At first, all the medical professionals said, still recovering. Need more time. You’re not 20.
But I have made no improvements. I am 100% worse. I can’t jog either. I was able to run 8 1/2 -9 minute pace. Now I am 13 minute pace and I have to stop periodically.
I also can’t talk and exercise anymore. Even at slow cycling, jogging, I can no longer talk. I could always talk unless doing hard intervals. I am focused entirely on relaxing and getting my next breath.
Stress echo was Normal. Getting in with my cardiologist/ cardio thoracic surgeon is a challenge. Always rescheduled. I am scheduled to see a pulmonologist and the surgeon and cardiologist in next month.
I am so very sad. I would never have had this surgery if I anticipated this horrible outcome. I was very strong cyclist the day before this surgery and now I am miserable on the bike, how exhausted I feel after each short bike ride is insane. I used to be so invigorated after every ride, 4-5 hours or brisk 1 hour. Used to climb 1 million feet per year.
I’m desperate for help. I can’t bear to think my cycling/ jogging is over.
Thank you for your time and help.

 

[pellicle]

Hi Jackie

sorry to read this ...

...
My severe Mitral valve regurgitation came on pretty suddenly. I noticed being more winded on steep climbs and it took me longer to recover at top. Also trying to jog with puppy up hill, suddenly would need to stop, could not catch my breath. Husband attributed it to my age (60yo) but I knew that there is was something wrong.
Had robotic mitral valve repair with ring 10/20/2023. Was instructed I could only walk for 6 weeks.

so perhaps the actual issue is the repair has failed and that you need a valve replacement?

I was told I would feel great, would be back to my cycling.

they should have said things to you like:

• probably
• may require valve replacement
• uncertainty

8 months later, I am miserable. I can only ride very slow. If I try to exert myself, I feel like I can’t breath. Literally like a fish out of water. My husband says it’s like I am stuck in first gear.

sounds like you need some data on your valve now ...

Always rescheduled. I am scheduled to see a pulmonologist and the surgeon and cardiologist in next month.

this is a good step, but why would you not see another cardiologist?

I’m desperate for help. I can’t bear to think my cycling/ jogging is over.

its a setback for sure, but I'm of the view that it can be fixed.

My own personal experience is in Aortic valves, but from what I know of the literature "repairs" are not at all a 100% certainty and needs to be balanced against the probability of failure.

Best Wishes

 

[3mm]

Jackiecip - I am sorry to hear about your situation. When you see your cardiologist and surgeon, be sure to have written notes about the problems you are seeing, and written questions you want them to answer. This will help to avoid missing anything important.

Please take life 1 day at a time. Each day do the best you can, and then allow yourself to rest. I will pray for you.

 

[Deidra]

These symptoms definitely sound unusual for the circumstances and I think it would really be worth bringing them up with the cardiologist and pulmonologist. If your heart itself is structurally and functionally sound, which it sounds like it is if they say the stress echo is normal, there's a good chance that whatever is causing this can be fixed.

I agree that it would be helpful to write down detailed logs of your symptoms and when they happen to show to the doctors.

I am so very sad. I would never have had this surgery if I anticipated this horrible outcome. I was very strong cyclist the day before this surgery and now I am miserable on the bike, how exhausted I feel after each short bike ride is insane. I used to be so invigorated after every ride, 4-5 hours or brisk 1 hour. Used to climb 1 million feet per year.
I’m desperate for help. I can’t bear to think my cycling/ jogging is over.

It totally makes sense that you feel this way and I'm sorry to hear about your situation.

I am desperate for help/answers.

Unfortunately, I think the only people who can give you concrete answers will be your doctors. Like pellicle said, there's a chance the repair didn't stick and the valve needs to be replaced. But it could be any number of things. If they brush you off and say "oh it's just because you're old" or "oh you need more time to recover", get a second opinion. The doctors are there to provide us with a service, and if they fail to do so it's fully within your rights to go see someone else.

At the end of the day, it sounds like you're doing everything you can at the moment (going to see the relevant medical professionals) but I totally get that the waiting can be the worst part.

 

[Gail in Ca]

I’m sorry to read about how you feel after mitral repair. I had mine repaired when I was 54 and it was at mod to severe. I thought it would be the last time I needed heart surgery. I felt great after recovering, and could really tell the difference on my activity level with a mitral that didn’t leak.
However, in a few years I didn’t feel the same and found it was leaking moderate.
My cardiologist said he didn’t think I’d ever need another surgery. Now, 16 years after surgery, it’s leaking severely and I’m having symptoms. The top surgeon at Cedars-Sinai has recently said I can’t have a 4th surgery, too high risk. This came as a bit of a surprise because I thought I would always be able to be fixed with surgery. I’m awaiting info on my other option a TMVR.
You definitely need to see your cardiologist, have an echo or heart MRI to see what your valve is doing or if something else happened during surgery. I think you should feel much better by now. Good Luck!!

 

[Jeff Lebowski]

8 months later, I am miserable. I can only ride very slow. If I try to exert myself, I feel like I can’t breath.

Greetings, like you, I am a road cyclist and ultra marathon runner. Unlike you, I had my aortic valve replaced with a mechanical valve in March. It has been two months since my surgery and now I can run about 7 km with 5:50 km/pace and I can do 60 km road bike rides with an average speed of 28 km per hour.

One thing caught my attention in what you wrote, it seems that you usually have a breathing problem. whereas endurance athletes like you should have a very good lung capacity. did you have the opportunity to have your lung capacity measured after the surgery? as you know, after the surgery, exercises are done to restore the lung capacity with the triflo breathing exercise device. Did you use this device after the operation? Maybe the problem is not in your heart, but in your lung.

 

[Woodcutter]

Jackiecip: I am sorry to hear your situation as it sounds very similar to my own. I am a lifetime distance runner and had a mitral valve repair (with and annuloplasty ring) for regurgitation just before my 50th birthday. I recovered quickly and my doctors were very pleased however I literally was unable to run more than a few hundred meters. I was very slow and in that short time I'd feel the pressure in my chest build until I had to stop. I was determined to resume running and on the occasions where I would push to run more than a few minutes I would be coughing/spitting up blood from my lungs.

I had to put considerable time and energy into my own investigating and ultimately finding a new cardiologist and surgeon. At one point, my original surgeon told me: "you will never run again". As a counterpoint, my new cardiologist early on told me: "I will get you running again".

In my case, the repair nicely corrected the regurgitation. However, in tightening up the valve it also made it smaller. Further, there was enough calcification in the leaflets, that my repaired mitral valve was now considerably smaller and what I call effectively stenotic. I could walk around and do everyday tasks just fine but anything requiring high cardiac output was a no. The normal mitral valve area is 4-6 sq cm and mine was now 1.2. Under cardiac demand (running), this restriction of blood into the ventricle resulted in pressure building up into my lungs (pulmonary hypertension of sorts) and I could still push hard enough to cause the bleeding in my lungs.

To correct this I underwent a second surgery to remove the repair/native valve and now have a mechanical mitral valve. I was able to get back to running although I was/am clearly slower than before the first surgery. What my 6 months of not being able to run did allow me to do was appreciate and prioritize running (as opposed to racing).

Note: the stress echo that clearly revealed my high pressure gradients under load was a little tricky to obtain and was specified by my 2nd surgeon. They literally moved the ultrasound equipment right next to the treadmill and had 3 technicians working so they could capture the necessary data within seconds of the treadmill activity.

 

[kevanndo]

Jackie, a quick thought popped into my head when I read your situation. I would ask your cardiologist to do complete blood work and specifically check your reticulocyte count to see if there is evidence of hemolytic anemia, which could possibly be causing your symptoms. What you are experiencing very much reminds me of what my daughter went through when she had a mitral valve repair done at the age of six. Like you, we were told she would feel great after the surgery; on the contrary, she actually appeared much worse when she tried to engage in any physical activity. At six weeks post-op, she was hospitalized due to very concerning results from her blood work and was eventually diagnosed with hemolytic anemia. If you can't get in to see a cardiologist soon, perhaps your primary care physician could order this blood work for you so at least you can get some answers quickly.

 

[3mm]

In my case, the repair nicely corrected the regurgitation. However, in tightening up the valve it also made it smaller. Further, there was enough calcification in the leaflets, that my repaired mitral valve was now considerably smaller and what I call effectively stenotic.

Woodcutter - Thank you for explaining this. It is very educational!

 

[Jackiecip]

Hi Jackie

sorry to read this ...

so perhaps the actual issue is the repair has failed and that you need a valve replacement?



they should have said things to you like:

• probably
• may require valve replacement
• uncertainty

sounds like you need some data on your valve now ...



this is a good step, but why would you not see another cardiologist?


its a setback for sure, but I'm of the view that it can be fixed.

My own personal experience is in Aortic valves, but from what I know of the literature "repairs" are not at all a 100% certainty and needs to be balanced against the probability of failure.

Best Wishes

Thank you so much Pellicle! This is very helpful, straight forward, and great information/guidance. I really appreciate your response. It makes me hopeful! Best, Jackie

 

[Jackiecip]

Jackiecip - I am sorry to hear about your situation. When you see your cardiologist and surgeon, be sure to have written notes about the problems you are seeing, and written questions you want them to answer. This will help to avoid missing anything important.

Please take life 1 day at a time. Each day do the best you can, and then allow yourself to rest. I will pray for you.

Thank you so much 3mm! I really appreciate your thoughtful, helpful response and I will do this! Best, Jackie

 

[Jackiecip]

These symptoms definitely sound unusual for the circumstances and I think it would really be worth bringing them up with the cardiologist and pulmonologist. If your heart itself is structurally and functionally sound, which it sounds like it is if they say the stress echo is normal, there's a good chance that whatever is causing this can be fixed.

I agree that it would be helpful to write down detailed logs of your symptoms and when they happen to show to the doctors.


It totally makes sense that you feel this way and I'm sorry to hear about your situation.


Unfortunately, I think the only people who can give you concrete answers will be your doctors. Like pellicle said, there's a chance the repair didn't stick and the valve needs to be replaced. But it could be any number of things. If they brush you off and say "oh it's just because you're old" or "oh you need more time to recover", get a second opinion. The doctors are there to provide us with a service, and if they fail to do so it's fully within your rights to go see someone else.

At the end of the day, it sounds like you're doing everything you can at the moment (going to see the relevant medical professionals) but I totally get that the waiting can be the worst part.

Thank you so much Deidra! I really appreciate thoughtful and helpful response and you make me feel hopeful again! Best, Jackie

 

[Jackiecip]

I’m sorry to read about how you feel after mitral repair. I had mine repaired when I was 54 and it was at mod to severe. I thought it would be the last time I needed heart surgery. I felt great after recovering, and could really tell the difference on my activity level with a mitral that didn’t leak.
However, in a few years I didn’t feel the same and found it was leaking moderate.
My cardiologist said he didn’t think I’d ever need another surgery. Now, 16 years after surgery, it’s leaking severely and I’m having symptoms. The top surgeon at Cedars-Sinai has recently said I can’t have a 4th surgery, too high risk. This came as a bit of a surprise because I thought I would always be able to be fixed with surgery. I’m awaiting info on my other option a TMVR.
You definitely need to see your cardiologist, have an echo or heart MRI to see what your valve is doing or if something else happened during surgery. I think you should feel much better by now. Good Luck!!

Thank you so much Gail in Ca! I'm so extremely sorry for what you are going through. I can't imagine the emotional roller coaster. I hope you get good news that you are a candidate for TMVR and can start feeling great again. I appreciate your thoughtful and informative response. It really helped me! Best, Jackie

 

[Jackiecip]

Greetings, like you, I am a road cyclist and ultra marathon runner. Unlike you, I had my aortic valve replaced with a mechanical valve in March. It has been two months since my surgery and now I can run about 7 km with 5:50 km/pace and I can do 60 km road bike rides with an average speed of 28 km per hour.

One thing caught my attention in what you wrote, it seems that you usually have a breathing problem. whereas endurance athletes like you should have a very good lung capacity. did you have the opportunity to have your lung capacity measured after the surgery? as you know, after the surgery, exercises are done to restore the lung capacity with the triflo breathing exercise device. Did you use this device after the operation? Maybe the problem is not in your heart, but in your lung.

Thank you so much Jeff Lebowski! I'm so happy you are doing so amazingly right after surgery! Your ability to get back to cycling/running is my dream! You must be thrilled to get back to what you love! Yes, my breathing has been an issue from day #1 after surgery. It's so weird because I NEVER thought of my breathing while cycling or running BEFORE this surgery. It was just natural and I could sustain long, hard efforts for my age. I was always top in my age on any segments on Strava and was as good or better than younger people, men and women. It's only since this surgery that I think of my breathing. I feel almost like my "normal endurance self" for a short burst but then that is it, I am toasted and trying to find my breath. I need to recover and get my breath back before I can continue. I either walk (if jogging) or crawl on the bike (if cycling) to recover and try again. I was given the incentive spirometer ( the one chamber method) post op and did it religiously. I didn't even know there was a triflo breathing exercise device, maybe this is more beneficial? I did stop it using it after about 8-10 weeks after surgery because I felt my jogging/cycling was enough, maybe I was wrong? Before surgery, I was breathless on only certain things like a hard, long steep gradient 15% or running with my puppy up 8-10% gradient (how I discovered severe mitral regurgitation); however, it was NOT incapacitating like it is post op and to this constant extreme. Overall, I was just as strong cycling and jogging with the severe regurgitation.I think it's my lung too or maybe the valve has failed or too small to get my oxygen needs. I'm hoping the pulmonologist visit will give me some answers/rule things out. Thank you for your very thoughtful, helpful response! I hope I can feel as good as you do once I figure this out! Best, Jackie

 

[Jackiecip]

Jackiecip: I am sorry to hear your situation as it sounds very similar to my own. I am a lifetime distance runner and had a mitral valve repair (with and annuloplasty ring) for regurgitation just before my 50th birthday. I recovered quickly and my doctors were very pleased however I literally was unable to run more than a few hundred meters. I was very slow and in that short time I'd feel the pressure in my chest build until I had to stop. I was determined to resume running and on the occasions where I would push to run more than a few minutes I would be coughing/spitting up blood from my lungs.

I had to put considerable time and energy into my own investigating and ultimately finding a new cardiologist and surgeon. At one point, my original surgeon told me: "you will never run again". As a counterpoint, my new cardiologist early on told me: "I will get you running again".

In my case, the repair nicely corrected the regurgitation. However, in tightening up the valve it also made it smaller. Further, there was enough calcification in the leaflets, that my repaired mitral valve was now considerably smaller and what I call effectively stenotic. I could walk around and do everyday tasks just fine but anything requiring high cardiac output was a no. The normal mitral valve area is 4-6 sq cm and mine was now 1.2. Under cardiac demand (running), this restriction of blood into the ventricle resulted in pressure building up into my lungs (pulmonary hypertension of sorts) and I could still push hard enough to cause the bleeding in my lungs.

To correct this I underwent a second surgery to remove the repair/native valve and now have a mechanical mitral valve. I was able to get back to running although I was/am clearly slower than before the first surgery. What my 6 months of not being able to run did allow me to do was appreciate and prioritize running (as opposed to racing).

Note: the stress echo that clearly revealed my high pressure gradients under load was a little tricky to obtain and was specified by my 2nd surgeon. They literally moved the ultrasound equipment right next to the treadmill and had 3 technicians working so they could capture the necessary data within seconds of the treadmill activity.

 

[Jackiecip]

Hi Woodcutter! WOW! Your description sounds like it is coming from my mouth. THIS is me. Incredible to hear this. I too recovered so fast, my cardiothoracic surgeon/team were very pleased too. I am so happy you found the right cardiologist who listened and investigated so thoroughly and a cardiothoracic surgeon! I can only imagine how happy you are right now. SO GREAT!

I get this, "appreciate and prioritize running (versus racing)". I'm okay with being slower but I want to enjoy the bike/jogging and not be gasping for air. I get zero joy now from the bike because I feel like it is a fight to breathe.
Not just a natural, enjoy my breath, enjoy the muscles moving, enjoy the sounds, enjoy the beauty around me, I am outside, I am strong, I feel so good.

Now, I am wiped out after a short, slow bike ride.

This is obviously not like having musculoskeletal running/cycling injury/surgery (easy peasy to overcome) so I kept thinking it was me. I was told over and over that my "age was an issue" and it was "still early in my recover" and even though it was minimal invasive it was still like open heart since my heart was on bypass for 6 hours and all the incisions.

So I have been so patient, trying my best, waiting to "turn the corner" to feel like my old good self! But zero improvements after 8 months and actually feeling worse than before surgery made me search out this forum for guidance/answers.
I have had 2 back to back treadmill stress ultrasounds because the first one didn't give them what they needed. I can ace these TM tests because the first 3 increments are walking, slowly inclining, but they make you hold on to the bar and raise the incline to 18% and speed and I could only make it though 2 more increments because my arms can't hold on that long. I can't do the stress test long enough to feel like I do on the bike or running. Then the transition to stop, get to the bed and get the ultrasound does take time. Even though it seems fast, there is definitely a lag. Your cardiologist was amazingly thorough and understood the implications of subpar test.

Your reply was so incredibly helpful and making me hopeful! I have a lot to consider after these next 3 upcoming appointments (Pulmonologist, Cardiothoracic Surgeon, and Cardiologist). Enjoy your runs! Thank you so very much! Best, Jackie

 

[Jackiecip]

Jackie, a quick thought popped into my head when I read your situation. I would ask your cardiologist to do complete blood work and specifically check your reticulocyte count to see if there is evidence of hemolytic anemia, which could possibly be causing your symptoms. What you are experiencing very much reminds me of what my daughter went through when she had a mitral valve repair done at the age of six. Like you, we were told she would feel great after the surgery; on the contrary, she actually appeared much worse when she tried to engage in any physical activity. At six weeks post-op, she was hospitalized due to very concerning results from her blood work and was eventually diagnosed with hemolytic anemia. If you can't get in to see a cardiologist soon, perhaps your primary care physician could order this blood work for you so at least you can get some answers quickly.

Thank you so much kevanndo! I can only imagine how scary stressful this was for you worrying about your 6yo daughter. I'm so happy the medical team make a relatively quick diagnosis and your daughter received the proper treatment! So much happiness and relief when she was better.

This makes total sense and I will 100% ask for complete blood work. I have not had any blood work done since my surgery and I know a lot of my counts were pretty bonkers during my hospital stay. Thank you for this recommendation, I really appreciate your thoughtful and helpful response. Best, Jackie

 

[d333gs]

Greetings, like you, I am a road cyclist and ultra marathon runner. Unlike you, I had my aortic valve replaced with a mechanical valve in March. It has been two months since my surgery and now I can run about 7 km with 5:50 km/pace and I can do 60 km road bike rides with an average speed of 28 km per hour.

One thing caught my attention in what you wrote, it seems that you usually have a breathing problem. whereas endurance athletes like you should have a very good lung capacity. did you have the opportunity to have your lung capacity measured after the surgery? as you know, after the surgery, exercises are done to restore the lung capacity with the triflo breathing exercise device. Did you use this device after the operation? Maybe the problem is not in your heart, but in your lung.

Hi Jeff
Did you have a 'Full Zipper'?

 

[Jeff Lebowski]

Hi Jeff
Did you have a 'Full Zipper'?

hi, yes

 

[morellib]

I’m sorry you’re having these issues. I too am an avid cyclist and had my aortic valve replaced in December 2022 at age 70. For all of 2023 I felt that my cycling was “off”— climbing was a struggle, average speed was down, didn’t feel like doing longer rides. This year I noticed a big improvement—better climbing, higher average speed and longer rides. I did my first century last week since before my surgery and I felt great. I agree with what others have said but I also think that time is needed to see where your new normal is. I’m on track for 4,000 miles this year and I definitely feel better on the bike than I did in the first year following surgery…